Thank you for replying.
I will be meeting with my oncologist next Monday at which time we will decide on whether to add Verzenia. I read comments on the "Deciding wether to go on abemaciclib" thread and at this time, I think I will decline it. At 72, I am not sure that the benefit is worth risking the sever side effects noted(eye infection-vicsmit, hair loss-lynelyn, diarrhea/vomiting...). I am waiting to hear from my doctor as to what she thinks the benefit will be for my case. I have stage III cancer, but low Ki-67 and only 1 node micrometastases. What is the risk of recurrence in the first 2-3years for me? What is the reduction benefit by adding Verzenio?

Using brand names for ease. I’ve been taking Kisqali 400 mg for 4 years for recurrent breast cancer IDC ER/PR+ HER2- BRCA2+ CHEK2+ Ki-67 50%. Had a double mastectomy the first time around, stage 1 but genetic mutations. 7 years later recurrent BC in chest wall. Removed tumor, positive margin. 37 radiation treatments then started Kisqali and Letrozole at the same time. Can’t do chemo because of pre-x neuropathy. Because the BC is so aggressive my oncologist felt some cells likely got away before surgery. Once the tumor was removed, nothing large enough to show on CT scan. 4 years later still nothing showing except the non-related lung NETs neuroendocrine cancer — 50+ slow growing tumors.

Originally took 600 mg Kisqali but immediately had the dangerous heart rhythm QT prolongation. Lowered dose to 400 and it stopped. I have had paroxysmal afib since 5 days after starting Kisqali. My worst side effect. Ongoing issue. First year or two extreme fatigue and trouble staying awake. The fatigue is less severe now than the first two years. I still run out of energy quickly. I now have serious insomnia issues rather than sleepiness but that could be the Letrozole. Hair thinning. Lower BP. Aggravates my neuropathy. Some joint pain probably from Letrozole. It lowers immunity. I wash my hands a lot and avoid sick people but am not overly concerned about lower immunity. When I catch a bug, I’m sicker and for longer than in the past. It sounds awful when I list it out but I will stay with the treatment as long as it’s effective. I still enjoy life and am still here.

Everyone reacts so differently to meds. One person has severe side effects and another has none and everything in between. I’m typically prone to adverse side effects with most meds.

Why Kisqali? My oncologist chose that over Ibrance and Verzenio because the clinical trials showed all 3 meds extended progression free survival time but only Kisqali showed an increase in overall survival. Ask your oncologist to show you the latest clinical data for each.

I do not like the heart rhythm issues from Kisqali but want the most effective med. Verzenio commonly causes severe diarrhea and that’s a quality of life dealbreaker for me. Just my preference. I would love to take a break from meds but don’t want to risk it. Lastly, I started octreotide for my lung NETs 2 months after the Kisqali and that compounded the original side effects. Hard to know how much fatigue and hair thinning (not bald) each med is causing.

Hope this helps. Prayers for your decisions and successful outcome.

I am doing ok. Thank you for asking. I decided to go on Verzenio because of my possible recurrence/spread of cancer. I chose Verzenio because I did not want to risk heart issues. I asked for the lowest dosage (50 mg) to minimize side effects. I was told that the lower dosage is effective. I take 50 mg twice daily. I will be on my third month next week. I had one episode of diarrhea in the beginning, but none since. I have noticed hair thinning...taking lots of supplements for that. I am pre diabetes so I am careful in eating healthy - lots of vegetables, no processed food, no fried greasy food, no sugar. I have osteoporosis so I am also exercising to manage that and the joint stiffness. My recent bone scan showed minimal bone loss with some improvements. Thankful for the new law that was passed this year, my max copay for Medicare drugs is $2000/yr. I started the drug last year and copay for just one month was more than $3000! I know that it is still early stages in terms of the medications, but I am hoping that I could maintain this and continue dancing which I love.